When I saw my chemo oncologist on the 26th, he presented me with another treatment option: going back on the Avastin via IV. This was the one that was stopped due to the swelling in my feet and legs as well as the protein in my urine. Since all the subsequent tests on the kidneys turned out fine, and the Avastin seemed to have the most success in slowing the progression of the cancer cells, the doctor felt it was worth a try. So I had my first biweekly IV Wednesday. If the swelling returns and I'm taken off the Avastin again, well, I honestly don't know what happens then.
I contacted Duke University about their clinical trials, and because I have multiple tumors now, even though the cell groupings are close to each other, I don't qualify for the much-hyped polio virus-turned-cancer cell killer, or any of the other trials, save one. For that one my tumor has to be something called EGFR (Epidermal growth factor receptor) amplified 5 fold. My oncologist is going to check the pathology from my previous surgeries tested to find out my number, though he said the number can change over time. The only way to know the current number is to test a new sample, which would require another surgery, which, as I explained previously, isn't really an option after having two already. So I think this is a long shot at best. If I did somehow get qualified, I'd have to go down to Duke every 2 weeks.
Showing posts with label Avastin. Show all posts
Showing posts with label Avastin. Show all posts
Friday, September 2, 2016
Sunday, August 14, 2016
Not good news on the cancer front
Again, if you see weird typos and such, let me know so I can fix them.
So in my last update I talked about the aftermath of the MRI I had at the end of April. During May I went through a brief round of radiation. I had 10 total treatments that only lasted maybe 10 to 15 minutes each After that I started the next chemo treatment, this medicine being called irinotecan. This was administered via IV (and it took about THREE hours each time) in a regimen spread out over a few weeks. It was done on Wednesdays. First they did it on back-to-back Wednesdays, then they'd skip a week, then they would repeat the process. The day after each second Wed. treatment I got an injection of a medication designed to keep my white blood cell count high.
Luckily, unlike the previous chemo, this one did not cause my legs or feet to swell. In fact, the previous swelling went away thanks to getting off the Avastin as well as changing my diet to reduce my salt intake. However, in the last 2 or 3 weeks or so my diet has very much gone to pot. I've been eating more junk food and red meat so my weight has come up a little bit; also, I think my feet are swelling a little bit so I really have to get control of what I'm eating again. I'm due to see the nephrologist in about 2 weeks. There shouldn't be any issue with my kidneys, though.
Which brings us to my latest MRI on Wednesday. I saw my chemo oncologist Friday. He had the results and they were not good. The area which showed the cancer cells in the last MRI still shows cancer cells. And he said there are more cells growing in kind of a ring pattern around that area.
He spoke to my radiation oncologist, who said they really couldn't do any more radiation because of the two previous rounds of radiation; there's only so much radiation that they can do to the brain, and it doesn't seem to be helping anyway even if they could do more. They also said they feel surgery isn't really an option since I've already had two in that area, though I have the option to a talk to a neurosurgeon about it.
My chemo oncologist said he reached out to Penn Medicine to the doctor I saw previously to see if I qualified for the clinical trial.(By the way, I did not qualify for that particular trial based on my genetic testing.) So he sent her an email to see if there were any other trials going on; he has not heard back from her yet.
He also suggested I should contact Duke University because they have a lot of activity as far as trials for treatments of glioblastoma. CBS News did a report on one a while back that showed great promise. I shared it on Facebook at the time. I don't know if I can get into the trial or any of the logistics as far as how many times/how often would I have to go down there and for how long.
In the meantime my chemo oncologist said there are two more chemo drugs I can try, but they don't have much of a track record for treating glioblastoma. One that seems to be slightly more promising would be in pill form given every six weeks.The other would be given intravenously every 3 weeks. My thought is right now to start on the pill form of the chemo and then try and see what clinical trials are available either here or at Duke in the meantime, but I have to let the doctor know of my decision when I see him on the 26th of this month.
I had a suspicion that it was not going to be good news just because some of my issues have seemed to worsen recently. My left leg has been still kind of weaker, dragging my foot when I walk. The forefinger and thumb on my left hand are still giving me problems: gripping things, typing and holding my phone, getting out of chairs or using a toilet in the restroom --all of this has really become frustrating. To hopefully alleviate of this, my doctor increased the dose on the steriod Decadron (it had been stopped for a while and then I went back on it but at a lower dosage). So incompetent customer service people, Jehovah's Witnesses knocking at the door, ignorant drivers who don't like stopping for pedestrians with the right of way -- get ready for more ROID RAGE!
Wednesday, May 4, 2016
Neverending Story -- new #cancerisabitch update
(Forgive any typos and the like if you spot them, and let me know so I can edit. I've already edited but I probably missed something.)
It's starting to feel a bit like piling on.
As previously mentioned here, my chemo oncologist stopped my Avastin treatments and referred me to a nephrologist to check on my kidneys because of protein in my urine. I also had a followup with my radiation oncologist the next day (April 26). I updated both on things like the leg swelling and weakness, general tiredness, the return of the focal seizures in my face, and some reoccurring problems grasping things with my left thumb and index finger and speech (stumbling on words, etc.), all which indicated that the glioblastoma was possibly reasserting itself. The two oncologists arranged to have me get an immediate outpatient MRI that very day. Sure enough, the tumor is starting to grow again.
I saw the radiation doc on the 27th. She said that having had two surgeries already, and especially with it not being extremely large yet, another surgery is not really an option now. She (consulting with the chemo doc) recommended another round of radiation, but only for two weeks (Mon. thru Fri.), and in a more limited area of the brain, followed by a different chemo treatment. To alleviate the issues I mentioned above, I was placed back on the steroid decadron. They (and, I assume, the lack of Avastin) have had positive effects. My legs, although there's still swelling, are stronger again, and my fingers and speech (and typing) are improving. And the extended-release version of Keppra the seizure specialist put me on (see last post) has completely stopped the facial twitching. For now, at least.
Today I saw the chemo doc, followed by, finally, because I had the wrong number for the office for a couple days (rolling eyes), the nephrologist.
Chemo doctor said that after I have the radiation (to be scheduled -- phone call tomorrow), I will start on irinotecan via IV. Because of side effects (possible nausea, diarrhea -- OH JOY! -- and lower white blood cell counts) he wants to lessen the amount of each dose and spread them out over a period of time a little. Maybe one dose one week and two doses a couple of weeks later, or something like that. To be determined.
He also said he tried following up with the doctor at Penn to find out if I quality for the immunotherapy vaccine clinical trial, and they haven't gotten back to him. He feels this is a sign that either I didn't qualify based on the genetic testing or they didn't have room, or something, because otherwise they would have likely contacted me quickly to get me into the program. (They also never got back to me after my recent followup. Another phone call tomorrow.)
As for the nephrologist, he really believes that the biggest factor in the protein in the urine is not from a kidney problem but basically some combination of the Avastin, my diet (way too much sodium) and the recent doubling in the dose of my blood pressure medication amlodipine. This is also an issue in my swollen legs. He thinks I have an extra 30 pounds of weight just from that. He has given me a prescription for another blood pressure med (one he takes himself, he said), and told my to cut my amlodipine back to where it was. He wants me to restrict my sodium intake, cut out red meats (NO MORE BURGERS??? NEVAH!!!! but I will cut back a lot), eat more chicken and fish, egg whites, etc.
One week after I'm on the new med he wants me to have blood work done (the fasting kind) and he also wants me to have an ultrasound on the kidneys. I follow up with him in August. If there are still problems at that point, he'll want to do a kidney biopsy, which would be a needle into my body to remove kidney tissue.
Okay, I think that covers the facts and figures, so to speak.
This feels like it's getting more and more complicated. So much to do, so much to keep track of, and I'm beginning to worry about whether I'll actually get to do some of the fun things I was hoping to do during the summer, like a few days at the shore, some Broadway shows in NYC, maybe a Phillies road trip. Sure, going to the downtown parks and festivals and the like are great, but I need more. What I really need are friends to do some of these things with. The people who I know would go places with me all live too far away. The people who live here are just acquaintances, or just Facebook "friends." And my family is great, but it's not the same dynamic. So if any of y'all can help me out here that'd be awesome.
Also, I swear I'm gonna get those Birthday Month Disco posts done.
And also again, READ AND SHARE MY RECENT POLITICAL POST, DAMMIT!
It's starting to feel a bit like piling on.
As previously mentioned here, my chemo oncologist stopped my Avastin treatments and referred me to a nephrologist to check on my kidneys because of protein in my urine. I also had a followup with my radiation oncologist the next day (April 26). I updated both on things like the leg swelling and weakness, general tiredness, the return of the focal seizures in my face, and some reoccurring problems grasping things with my left thumb and index finger and speech (stumbling on words, etc.), all which indicated that the glioblastoma was possibly reasserting itself. The two oncologists arranged to have me get an immediate outpatient MRI that very day. Sure enough, the tumor is starting to grow again.
I saw the radiation doc on the 27th. She said that having had two surgeries already, and especially with it not being extremely large yet, another surgery is not really an option now. She (consulting with the chemo doc) recommended another round of radiation, but only for two weeks (Mon. thru Fri.), and in a more limited area of the brain, followed by a different chemo treatment. To alleviate the issues I mentioned above, I was placed back on the steroid decadron. They (and, I assume, the lack of Avastin) have had positive effects. My legs, although there's still swelling, are stronger again, and my fingers and speech (and typing) are improving. And the extended-release version of Keppra the seizure specialist put me on (see last post) has completely stopped the facial twitching. For now, at least.
Today I saw the chemo doc, followed by, finally, because I had the wrong number for the office for a couple days (rolling eyes), the nephrologist.
Chemo doctor said that after I have the radiation (to be scheduled -- phone call tomorrow), I will start on irinotecan via IV. Because of side effects (possible nausea, diarrhea -- OH JOY! -- and lower white blood cell counts) he wants to lessen the amount of each dose and spread them out over a period of time a little. Maybe one dose one week and two doses a couple of weeks later, or something like that. To be determined.
He also said he tried following up with the doctor at Penn to find out if I quality for the immunotherapy vaccine clinical trial, and they haven't gotten back to him. He feels this is a sign that either I didn't qualify based on the genetic testing or they didn't have room, or something, because otherwise they would have likely contacted me quickly to get me into the program. (They also never got back to me after my recent followup. Another phone call tomorrow.)
As for the nephrologist, he really believes that the biggest factor in the protein in the urine is not from a kidney problem but basically some combination of the Avastin, my diet (way too much sodium) and the recent doubling in the dose of my blood pressure medication amlodipine. This is also an issue in my swollen legs. He thinks I have an extra 30 pounds of weight just from that. He has given me a prescription for another blood pressure med (one he takes himself, he said), and told my to cut my amlodipine back to where it was. He wants me to restrict my sodium intake, cut out red meats (NO MORE BURGERS??? NEVAH!!!! but I will cut back a lot), eat more chicken and fish, egg whites, etc.
One week after I'm on the new med he wants me to have blood work done (the fasting kind) and he also wants me to have an ultrasound on the kidneys. I follow up with him in August. If there are still problems at that point, he'll want to do a kidney biopsy, which would be a needle into my body to remove kidney tissue.
Okay, I think that covers the facts and figures, so to speak.
This feels like it's getting more and more complicated. So much to do, so much to keep track of, and I'm beginning to worry about whether I'll actually get to do some of the fun things I was hoping to do during the summer, like a few days at the shore, some Broadway shows in NYC, maybe a Phillies road trip. Sure, going to the downtown parks and festivals and the like are great, but I need more. What I really need are friends to do some of these things with. The people who I know would go places with me all live too far away. The people who live here are just acquaintances, or just Facebook "friends." And my family is great, but it's not the same dynamic. So if any of y'all can help me out here that'd be awesome.
Also, I swear I'm gonna get those Birthday Month Disco posts done.
And also again, READ AND SHARE MY RECENT POLITICAL POST, DAMMIT!
Monday, April 25, 2016
New #cancerisabitch Update: Featuring Pee!
So I found out today that I'm off (at least temporarily) the Avastin treatments.
A couple weeks ago the urine sample I gave them on my regular visit showed some protein in it, although not at a high level. My oncologist was concerned enough to have me do a 24-hour urine collection, which I completed a week ago (at home -- because there was no way I was carrying a jug of pee around with me to work, so I waited until my last work day until this coming fall, which was April 15th). This time the testing showed it had a even higher protein level. So he wants me to see a nephrologist to see if there's a problem with my kidneys. The protein could just be a side effect of the Avastin, though.
I'm still waiting to see if I quality for the immunotherapy vaccine clinical trial through Penn. They had said the genetic testing would take a couple months, and it's been that long since I saw that doctor, so I called the office to follow up, and I'm waiting to hear back from them.
Also, I mentioned a while back that my focal seizures had returned and were occurring periodically. I saw a seizure specialist, who thought I might benefit from switch from the regular formula of keppra (anti-seizure med) to the extended-release version. I've been on that for 3 weeks. At first it didn't seem to help -- in fact, at one point it happened three consecutive nights -- but I haven't had one in the last week-plus. So I'm keeping my fingers crossed.
I'm to schedule my next MRI in May.
A couple weeks ago the urine sample I gave them on my regular visit showed some protein in it, although not at a high level. My oncologist was concerned enough to have me do a 24-hour urine collection, which I completed a week ago (at home -- because there was no way I was carrying a jug of pee around with me to work, so I waited until my last work day until this coming fall, which was April 15th). This time the testing showed it had a even higher protein level. So he wants me to see a nephrologist to see if there's a problem with my kidneys. The protein could just be a side effect of the Avastin, though.
I'm still waiting to see if I quality for the immunotherapy vaccine clinical trial through Penn. They had said the genetic testing would take a couple months, and it's been that long since I saw that doctor, so I called the office to follow up, and I'm waiting to hear back from them.
Also, I mentioned a while back that my focal seizures had returned and were occurring periodically. I saw a seizure specialist, who thought I might benefit from switch from the regular formula of keppra (anti-seizure med) to the extended-release version. I've been on that for 3 weeks. At first it didn't seem to help -- in fact, at one point it happened three consecutive nights -- but I haven't had one in the last week-plus. So I'm keeping my fingers crossed.
I'm to schedule my next MRI in May.
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